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The infantilized researcher and research subject: ethics, consent and risk

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Abstract

Current research ethics processes, based on the mantra of privacy and institutional protection, take a paternalistic approach to research participants that leaves them open to harm. Reflecting on our own research/consultancy as a case study to illustrate the current flaws, we explore our and our subjects’ experiences within the wider political context of institutional ethical rules and the Australian NHMRC guidelines. In doing so we argue for fundamental changes to the modern research ethics processes – a system that treats participants more as research collaborators rather than victims in waiting. A complete review of ethics processes is needed to empower participants and researchers to recognize the reality of the process as co-created and negotiated. This includes changes at the top level of research administration – a shift in ethics policies and procedures as well as greater education in ethics with commensurate trust for active researchers.

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... The recent changes to EU regulations on data protection (Regulation (EU) 2016/679, 2016) have contributed to increased emphasis on contractual agreements of consent during recruitment. Critics argue that this practice is insufficient for governing people's integrity and freedom when taking part in qualitative research (Connor et al., 2018;Smette, 2019). Some have cautioned that in specific cultural and socio-economic contexts, signing contracts might involve insecurity, suspicion, fear or exclusion for participants (Wynn, 2018). ...
... Even though the inconsistencies between the two are evident, both require researchers' engagement and consideration. Several authors have discussed the challenges that emerge as a result of their incompatibility (Connor et al., 2018;Heath et al., 2007;Okyere, 2018;Perez, 2019;Roulet et al., 2017;Smette, 2019). One example is that when juggling procedural ethics and the particularities of micro-ethics as two separate practices, the researcher may end up treating informed consent as 'a necessary evil, instrumental in nature, separate from research itself' (Hamilton, 2009: 86), performed only to satisfy institutional and legal obligations. ...
... Critics of the growing emphasis on protecting individuals' autonomy through informed consent, argue that the this focus on participant vulnerability ultimately is funded on a distrust of participants' capacities (Connor et al., 2018;Gallagher et al., 2010;Van den Hoonaard, 2018). Schulz (2020) explains this wariness as a paternalistic approach that positions researchers as almighty, in-control experts, whilst participants are presumed to be constantly 'vulnerable and in need of external protection' (Schulz, 2020: 11). ...
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This article examines ways of approaching informed consent as a relationally constituted process in qualitative research practices. It argues that a researcher’s operationalization of informed consent should be coherent with the overall epistemological framework of the project. Based on empirical examples from an ethnographic inquiry in an educational setting, the principle of informed consent is discussed as a reflexive and ethical tool throughout the inquiry, including its pre-fieldwork, fieldwork and post-fieldwork phases. Strategies of explicitly and implicitly (re)negotiated consent and dissent are discussed and illustrated by drawing on some of the recent discussions of continuous consent practices. The article’s conceptualization of a continuous, situated and relational approach to informed consent is also supported by the concepts of response-ability and thinking with care in research ethics.
... All too often, however, the representation of research relationships during (post-) conflict zones is characterized by an unreconstructed view, assuming and simultaneously reproducing an asymmetrical power paradigm between researchers and informants, in favour of the former (Malejacq and Mukhopadhyay, 2016), thereby generating essentialist and infantilizing portrayals of research participants (Connor et al., 2017). Within these frameworks -which frequently take on neo-colonial tendencies -scholars are positioned and position themselves to be in control of passive research subjects and the entire research process at large, while informants are presumed to be inevitably vulnerable, always in need of external protection and without any agency. ...
... Initially drawn into the social sciences and humanities from a medicalized framework, ethics procedures and guidelines are predominantly framed as aiming to protect respondents from (additional) harms and risks due to the research process. These procedures have thereby registered significant advances into re-calibrating unequal power relationships and contributed towards addressing a troubling history of unethical research (Connor et al., 2017). In their dominant application, ethical guidelines and procedures broadly centre around the methodological and ethical principle of 'do no harm' (Fujii, 2012), as well as the protection of research participants' identities -whereby privacy, confidentiality and anonymity frequently constitute key pillars (Baez, 2002). ...
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This article re-conceptualizes the highly ambivalent relationships between researchers and research participants in conflict zones, with a focus on recognizing respondents’ multiple and fluid positionalities. Standardized and dominant approaches to qualitative research are largely based on essentialist and infantilized portrayals of research participants and neo-colonial assumptions regarding the research relationship: informants are presumed to be inevitably vulnerable and in need of external protection, while the researcher is positioned as the omnipresent expert in control of the research process. In reality, however, research participants rarely exclusively occupy the ‘oppressed victimhood’ axis of identity and frequently take on active roles in the research and data collection process in a myriad of ways. I elucidate how especially in (post-)conflict zones, research participants frequently re-shape power dynamics by exercising agency over the researcher and the research process. While previous studies have considered how informants’ agency can shape processes of knowledge production, in this article I expand this focus by examining how key-informants can, and frequently do, facilitate the researchers’ safety and security. I specifically draw on personal experiences of empirical research in Northern Uganda. I demonstrate how in a particular moment of post-conflict insecurity – while being trapped in-between the exchange of gunfire between the Ugandan police and an armed group – one of my key-informants ensured my physical protection and safety, thereby exercising power over me and the research relationship. The key-informants in this context thus occupied multiple positionalities – ranging from informant to protector, evidencing that research relationships are never static but rather contextual, shift and fluctuate. Such ambivalent and fluid power dynamics are more reflective of the lived realities of qualitative research and can influence the research process by positioning researchers and research participants on more equal terms.
... The researcher immerses him or herself into the participant's social world and this intimate encounter gives rise to the development of a research relationship. Given the inherently intersubjective nature of qualitative research, a myriad of scholars have pointed to the inherent limitations of institutional ethical and deontological frameworks to guide qualitative health researchers in the ethical tensions they face during day-to-day relational interactions with participants in the field (Connor, Copland, & Owen, 2018;D'Souza, Guzder, Hickling, & Groleau, 2018;Hewitt, 2007;Kendall & Halliday, 2014). Here, in the application of fundamental ethical principles, several authors addressed the importance of a contextual and culturally sensitive understanding of these institutionalized principles, an understanding which takes into account the challenges of a continuous evolving, indeterminate research course, situated in a social context (Hewitt, 2007;Ruiz-Casares, 2014). ...
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In institutional ethical and deontological guidelines, there is a prevailing, static understanding of the research partnership, with a clear boundary between researcher and participant. In this article, we argue that such a static understanding may run the risk of impeding the development of an enhanced contextual and dynamic intersubjective understanding of the research partnership and its impact on the growing importance of role boundaries in qualitative research. Drawing from a refugee health study on trauma and forced migration, we explore the different ways in which participants and the researcher engaged with the researcher’s multiple positions and role boundaries. In doing so, we aim to contribute to a reflective research practice by providing tools to recognize signs of potential harm and offer potential vehicles of reconstruction and agency within the intersubjective space of a dynamic research relationship, within a continuous, shared renegotiation process of role boundaries.
... University ethical approval was secured, for a project respecting participants' reputation, their continued consent and confidentiality, and recognizing practices of integrity, as well as researcher scrutiny (Bryman, 2012). Participant validation was fully gained, meaning that the research findings authentically and fairly represent participants' perspectives (Connor et al., 2018). Receiving the investment of research funding is a gratifying endorsement; with a peripheral personal interest in the Waldorf movement, my intention remained academically objective in highlighting the presence of a unique minority education community and in exploring its endeavours, while bringing international perspectives together to examine views accountably. ...
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Within the education academic arena, there is almost no established research on the alternative Waldorf (or Steiner) education movement in the US or UK. This primary research investigates Rudolf Steiner’s philosophy of early childhood Waldorf education, and its child-centered and inclusive core. Ten kindergarten teachers in the US and UK educating children ages three through seven were interviewed on their values and practices, and on intrinsic notions of inclusion, which are scrutinized according to Lani Florian's inclusive pedagogy. Contrasting interpretation among practitioners on educating diverse learners emerge. US and UK Waldorf education appear situationally different, and yet the underlying educational ethos fundamentally remains the same. An anthroposophical understanding of the human being, and ‘the will’ of the kindergarten child who learns through imitation and play, underlies this far-sighted, holistic basis. Recommendation is for Waldorf early childhood studies to enhance transnational networks among themselves, and to make connections with broader academic educational clusters, in particular those on inclusion.
... Disclosing private details regarding one's health, political opinions, and sexuality, among other such themes, yields data that are usually subject to special management requirements. Although the same regulatory conditions apply to quantitative data, (pre)determining the level of sensitivity in qualitative human data is generally more difficult due to its less structured nature (see e.g., Connor et al. 2018). ...
Preprint
Qualitative data sharing practices have not developed as rapidly as those in quantitative domains. This is often explained by numerous epistemological, ethical, and pragmatic issues that concern qualitative data types in particular. In this essay I provide an alternative to the frequently expressed (often reasonable) concerns regarding the sharing of qualitative human data by highlighting three advantages of qualitative data sharing: a) informed consent can be discussed, negotiated, and validated, b) shared data can be curated by special means, and c) the privacy risks are mainly local instead of global. I hope these three reasons further encourage qualitative psychologists to share human data when it is epistemologically, ethically, and pragmatically possible.
... Nevertheless, in the health and social sciences, the way in which ethics review boards function has been called into question, on the basis that their biomedical model may not be apt for some research carried out in this field, particularly in the case of studies using a qualitative approach (Vermeylen & Clark, 2017). The boards charged with reviewing qualitative research proposals still tend to assume that projects should emulate quantitative research conducted in accordance with the medical model (Connor et al., 2018;Giraud et al., 2019). The problem with this approach is that the decisions taken by an ethics review board at the start of a research project are far removed from actually happens during the study. ...
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When research involves people, ethics are fundamental. In the health and social sciences, when qualitative methodologies are used, in addition to ensuring an ethical process approved by the ethics review board, it is also necessary to guarantee an ethical practice capable of responding adequately to the complex questions and dilemmas which arise as the study progresses. This theoretical article analyses some of the most sensitive issues involved in qualitative research and discusses the following questions: (a) How should ethics be approached when working with vulnerable groups? (b) Is informed consent enough? (c) Should we rethink anonymity? (d) What is the difference between confidentiality and anonymity? (e) What exactly do we mean by relational ethics? (f) How can we avoid hurting people, yet remain honest? In the conclusions, we discuss some basic aspects for ensuring ethical studies. This paper, therefore, may be of interest to all health and social researchers concerned about ensuring that their studies comply with ethical principles which recognise, protect and respect participants’ rights.
... So too, much of this advice implicitly presumes the researcher is an objective agent who remains unaffected by research. While there is an enormous body of resources that focus on protecting participants from harm (Connor et al., 2017;Drake, 2014), there is very little focus on how these issues affect researchers. The issue, then, of 'researching the researcher' (Campbell, 2002) remains relatively unexplored and taken-for-granted (see also the articles in this Special Issue). ...
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The abstract for this document is available on CSA Illumina.To view the Abstract, click the Abstract button above the document title.
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Susan T. Fiske, chair of the National Research Council Committee on Revisions to the Common Rule for the Protection of Human Subjects in Research in the Behavioral and Social Sciences, and Eugene Higgins Professor of Psychology and …
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Formal research-ethics committees in Canada now function as an industry, costing over thirty-five million dollars annually. The Seduction of Ethics argues that while ethics codes are alluring to the public, they fuel moral panic and increase demands for institutional accountability. Will C. van den Hoonaard explores the research-ethics review process itself by analysing the moral cosmology and practices of ethics committees regarding research and researchers. The Seduction of Ethics also investigates how researchers have tailored their approaches in response to technical demands — leading social science disciplines to resemble each other more closely and lose the richness of their research. Van den Hoonaard reveals an idiosyncratic and inconsistent world in which researchers employ particular strategies of avoidance or partial or full compliance as they seek approval from ethics committees.
Article
This article is coauthored by four prisoners and a prison-researcher. In it, the authors discuss the differing aims and aspirations of research participants and scholars and their implications for doing prison research. Unlike most other accounts of prison research, the authors stress the experience of those being interviewed rather than that of the interviewer. The authors pay particular attention to the emotional nature of being part of a study and how a researcher gains participants’ trust. The authors also consider the utility of academic research and how inmate voices might be effectively harnessed to build a sustained critique of the U.S. prison system.
Article
This paper examines principles of feminist research and discusses the authors' attempts to use these principles in a systematic way in their own research. Three principles of feminist research are identified: research should contribute to women's liberation through producing knowledge that can be used by women themselves; should use methods of gaining knowledge that are not oppressive; should continually develop a feminist critical perspective that questions dominant intellectual traditions and can reflect on its own development.Consciously applying these principles in a research study of the relation between changes in consciousness and the changes in the structural situation of individuals raised several methodological issues and dilemmas. These include the impossibility of creating a research process that completely erases the contradictions in the relationship between the researcher and the researched; the difficulties in analysing change as a process; the tension between the necessity of organizing the data and producing an analysis which reveals the totality of women's lives; and problems of validity, particularly those raised when the research process becomes part of the process of change.
Article
For decades, scholars in the social sciences and humanities have questioned the appropriateness and utility of prior review of their research by human subjects' ethics committees. This essay seeks to organize thematically some of their published complaints and to serve as a brief restatement of the major critiques of ethics review. In particular, it argues that 1) ethics committees impose silly restrictions, 2) ethics review is a solution in search of a problem, 3) ethics committees lack expertise, 4) ethics committees apply inappropriate principles, 5) ethics review harms the innocent, and 6) better options exist.
Article
For serious practitioners of participatory action research, it is helpful to identify its principles. This paper outlines some principles of participatory action research in Australia that have been derived from theory and practice in both Western and cross-cultural contexts. Participatory action research is identified with critical social theory and is exemplified with two perspectives from participatory action research in Northern Australian Aboriginal communities.
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Laud Humphreys’ Tea Room Trade has been a regular topic in discussions of social research ethics for thirty years. This article reviews some of the past criticisms and offers a current assessment of Humphreys’ research ethics.
Article
This article makes a philosophical case for recharacterizing confidentiality in qualitative research from static notions of harm and privacy to one that accounts for a critical agency which exposes, subverts and redefines oppressive social structures. Confidentiality protects secrecy, which hinders transformative political action. Transformative political action requires that researchers and respondents consider themselves involved in a process of exposing and resisting hegemonic power arrangements, but such action is thwarted by secrecy and the methods used to protect it. This article suggests that in order for qualitative research to be transformative the convention of confidentiality must be questioned.
Article
This book was written to provide social scientists, their students, and members of research ethics committees with the theory and practical knowledge needed to plan ethically responsible social and behavioral research. It interprets current viewpoints on what ethical research is, especially those views presented in "The Belmont Report" (National Commission, 1978), a document set forth by the National Commission on the Protection of Human Subjects of Biomedical and Behavioral Research. It is also a practical handbook on how to translate ethical principles into valid research methods and procedures that satisfy both scientific and ethical standards. Parts of each chapter provide guidelines for satisfying federal regulations governing human research and for working with one's Institutional Review Board (IRB), or Human Subjects Committee, as such groups are variously called. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
The article reviews ethical consideration in social research and identifies current approaches to safeguarding ethical standards. One of these is the requirement to obtain approval from research ethics committees (RECs). Based on the results of a survey of UK social science academics about the process of applying to National Health Service RECs, we conclude that lessons can be learned for Sociology from the experiences of social researchers in Health. Overly rigid ethics committees could be counter-productive; we may need to reassess the functions of RECs and to strengthen other procedures to ensure the highest ethical standards for Sociology. Some suggestions for how this might be done are taken from the liter-ature in the hope that they will stimulate debate.
Chapter
Planning ResearchInstitutional ApprovalInformed ConsentAnalyzing and Disseminating Research ResultsSpecial Topics in Research EthicsResolving Ethical DilemmasConclusions
Article
Decision-making about the ethics of qualitative research is problematic where the research design is emergent, and the balance between risks and benefits for research subjects are difficult to ascertain prior to study implementation. The discourses of health/medical research ethics and those of social research are shown to be divergent and, furthermore, where ethics committees tie themselves to the health/medical model of ethical decision-making, qualitative research approaches can be disadvantaged. Having demonstrated the dual discourses and their relevance to qualitative research ethics, a critical review of current approaches to maximising the success of qualitative research proposals being considered for approval by ethics committees is undertaken. This leads to a call for a system of monitoring qualitative research so that the ‘benefit to risk’ ratio is always on the side of benefit. This has implications for the ways in which ethics committees are organised and the ways in which they function.
Article
This paper focuses on what feminist thought and practice add to the emergence of a postpositivist era in the human sciences. After delineating key assumptions regarding postpositivism, three questions are addressed: What does it mean to do feminist research? What can be learned about research as praxis and practices of self-reflexivity from looking at feminist efforts to create empowering research designs? And, finally, what are the implications of poststructuralist thought and practice for feminist empirical work?
Article
This article discusses how ethical and political issues affect contemporary research relationships. It focuses on the responsibilities of researchers studying organisations and elites, and the discussion draws upon the author’s experience of researching NHS primary health care services. The paper reviews the spread of “ethical guidelines” from medical to social research. Such guidelines primarily address ethical problems relating to individual researcher-researched relationships. Sociologists have criticised the application of medically-based guidelines to social research, while often accepting an ethical framework based on the researcher-researched dyad. But this limited conception of ethical responsibilities leaves complex organisational power hierarchies and their effects under-theorised. Researchers may then be vulnerable and lack guidance where organisational loyalties and market mechanisms have undermined the traditional supports of academic independence and professionalism. Sociologists could learn from critical medical scientists’ responses to some related ethical dilemmas, as some medical researchers have experienced these issues more acutely and for longer. Published (author's copy) Peer Reviewed
Article
This paper explores an aspect of the use of qualitative interviewing methods in researching sensitive and private aspects of people's lives. Using examples from two research projects that involved inviting participants to narrate their experiences of personal transition, the dilemmas encountered in doing this type of 'intimate' research are explored. By creating a space in which participants were invited to, and felt able to, narrate their personal experiences, both researchers found they shared a sense of what had constituted a 'successful' interview. This was one where the personal narratives constructed gave a distinct sense of a 'real' self through self-disclosure. Yet feelings of responsibility for acts of self-disclosure were experienced differently by the researchers. When the boundaries between doing sensitive feminist research and what other 'experts' do-counselling and therapy-became blurred the researchers reacted in different ways. This raises questions about the co-producing role of the sensitive feminist interviewer and prompts consideration of the ways in which qualitative interviewers are prepared for data collection in research. Can the invitation to narrate past and present experiences, together with future hopes, avoid offering potential therapeutic opportunities?
Article
This article examines contemporary meanings attributed to the ethical principle of confidentiality—a core practice dimension for social workers—in the context of current practice realities and legislative requirements. The meanings usually attributed to the term, together with Code of Practice requirements, are considered alongside the organizational and legal riders so frequently used to justify a stepping away from what clients may consider confidentiality to require. The particular difficulties associated for those in practice with families and children, and the implications of attention to best interests and paramount rights notions, are examined. The article concludes that, in lieu of a misleading commitment to confidentiality, the practitioner rather needs to commit to respectful and open dealing with client information.
Article
WHERE DID THE ETHICS REVIEW PROCESS go wrong for qualitative research, and how can we make it right, or at least better? This paper begins with an excerpt from an ethnography of attempting to attend an ethics review-related workshop, which exemplifies that the ethics-review process is based on epistemological assumptions aligned with positivistic research, and does not fit the qualitative research process. We suggest that a new format for ethics review, based on assumptions associated with qualitative research and ethnography, might be a better fit. In this model the researcher becomes the expert and the committee the learner or ethnographer. In this process the ethics review process is guided by four core open-ended questions that facilitate a fuller and richer exchange of information. The second part of this paper presents strategies that may lessen the risks associated with the unknown or emergent aspects of qualitative research. These strategies include a dual consent process and the co-opting of journal editors or thesis review boards to review ethical considerations prior to publication or sign off, and a renewed focus of ethics training.
Article
Social and psychological research generates three kinds of concerns about invasion of participants' privacy: that public exposure of their views and actions may have damaging consequences for them; that the procedures used to elicit information may deprive them of control over their self-presentation; and that the research may probe into areas that constitute their private space, overstepping the customary boundary between self and environment. The paper explores the psychological significance of preserving privacy in each of these three senses, the ways in which different kinds of research may threaten privacy in each case, the requirements for minimizing or counteracting such threats, and the conditions under which research representing a certain degree of invasion of privacy can nevertheless be justified.
Article
To lay the groundwork for a better understanding of patient views on medical confidentiality. Studies were found by searching medline, bioethicsline, and selected bibliographies. Articles concerning physician perspectives or implications of legal and administrative regulations were excluded. Only peer-reviewed journal articles reporting original research on patients' confidentiality views and conduct were included. Many patients are unaware of or misunderstand their legal or ethical right to medical confidentiality protections, which leads them to both over- and underestimate confidentiality protections. The possibility that medical information might be revealed, intentionally or not, to acquaintances in a clinic or other social community troubles patients as much as information release to insurers or employers. A significant minority of patients distrust confidentiality protections, leading some to report that they delay or forgo medical care. If doubtful that confidentiality will be upheld, patients will act independently to protect information. Our review found a wider variety of understandings and beliefs about medical confidentiality among patients than are often indicated in the writings of practitioners or legal experts. As medical confidentiality regulations evolve, these differences need to be recognized and accounted for in interactions between practitioners and patients.
Article
In this article, the authors present one of the key ethical features of research: confidentiality as maintained by nondis-closure of participants' identities. In light of (a) the contingency that certain participants might vest interest in research studies through their identity and (b) the concept of respect for participants' autonomy, the authors consider the possibilities of offering research participants the choice of nonconfidentiality, afforded as an autonomous (negative) right of refusal of nondisclosure of identity. They address the issue that this possibility generates within the context(s) of current codes of ethics related to health research and the manifest responsibilities of the institutional review process. In this way, they attempt to elucidate potential benefits and consequences that arise from confidentiality and nonconfidentiality.
Article
In this article, the author explores the importance of participatory, respectful, and community-specific approaches to research relationships across differences in social location and experience. Drawing on transcripts from group interviews with 6 young Aboriginal mothers from Vancouver's Downtown Eastside who had experienced substance use during pregnancy and fetal alcohol syndrome/fetal alcohol effects, she discusses three practical strategies used in her doctoral research to address the empirical and methodological implications of this work: the provision of honoraria, collaborating with community leaders in participant recruitment, and the use of shared analysis in group interviews. Shared analysis in the group interviews was integral to supporting policy analysis that challenges the privatization of mothering and substance use. Group interviews can benefit both the participants and the research, support womens' agency, and democratize the research process while mitigating the potential for the misrepresentation and appropriation of women's experiences.
Institutional review boards: politics, power, purpose and process in a regulatory organization
  • A Hamilton
Hamilton A (2002) Institutional review boards: politics, power, purpose and process in a regulatory organization. PhD dissertation, University of Oklahoma.
  • Archer M
Patient perspectives of medical confidentiality
  • P Sankar
  • S Mora
  • J Merz
  • N Jones
Sankar P, Mora S, Merz J and Jones N (2003) Patient perspectives of medical confidentiality. Journal of General Internal Medicine 18(8): 659-669.